I was entering contests this morning and came across an AquaFresh giveaway that asked me how as a Mom I go above and beyond....
What started as a quick entry really got me thinking. I wanted to share it with all of you who read my blog. I would love comments as this is a very personal post and feel a little "naked" hitting publish. Oh, well. Here it is:
The other morning my toddler sipped his milk and then turned to my husband and said, "Dadda, my milk tastes good". Both my husband and I got a little teary eyed at that. You see, both of my children have a rare metabolic disorder called Phenylketonuria, or PKU. We never knew we were both carriers till we had our son. The diagnosis changed my life forever and radically altered my duties as a Mom. I remember the doctors explaining the disorder to us and all I heard was "severe mental retardation". Scary for any Mother. The good news was if we followed their dietary therapy and listened to the doctors, we could prevent it.
So, I quit my job to tackle this dietary therapy head on! People with PKU can't process a part of protein like the rest of us, so protein in our foods becomes toxic and will kill brain cells. Did you know everything has protein in it??? They can't eat meat, dairy, nuts, or most grains and only vegetables & fruit in moderation. To sustain life they drink "milk" or a dietary formula for life that gives them all the vitamins & nutrients they need to live. So, every night I am up with cans, glass bottles & my gram scales. But, my kiddos do eat some... again it must all be weighed on the gram scale, protein content looked up and then recorded for the day. We take once a week blood tests to check the phe level and then the dietary therapy can be modified. It takes time, organization and a whole lot of love.
So, how do I go above and beyond? Well, I don't really think of it that way. I changed my life because I love both of my children (my baby daughter also has PKU...it was a 25% chance) and would go to the ends of the earth to insure they are healthy and happy. I hope that beyond that I can help my children to accept their differences and even enjoy being unique. So, by liking his "milk" I think I have successfully gone above and beyond.
Don't hesitate to ask if you have any questions about this metabolic disorder. I am always hoping to educate people since this is pretty rare. I tried to keep it all simple as it is a pretty complex issue. Thanks!
Awww... it's so precious when the little ones like their special foods. I know with J that it was always sweet when he loved a particular food that he needed.
ReplyDeleteThank you for sharing this!
wow--you are an amazing Mom! You have done a fabulous job caring for your sweet little ones! Well done!
ReplyDeleteWow! What a tough thing and you speak about it with such ease for someone who feels naked! :) Thank you so much for sharing this story! You are doing such a wonderful thing for your kids! I'm super-impressed with your strength :)
ReplyDeleteWOW! That must be hard work, but a labor of love. Mom's will do anything for their babies! You are admirable.
ReplyDeleteDon't you think that such things (Such as PKU) can change your life & make you more greatful for things that others may take for granted? I feel lucky in a way to have MS because I see life so much different. I know it's different when kids have such & it's not fair to them..
ReplyDeleteThank you all so much for the kind comments! Yes, our lives were changed so completely with a simple blood test. Sometimes I feel guilty when we visit the children's hospital. My children are doing so well and the outside world would hardly notice a difference. I hope my children will grow up to be patient & tolerant of all differences and special needs.
ReplyDeleteI am so glad it was found early and you are able to deal with it all. My son needed goats milk back in 1980 to thrive (breast, formula, soy, etc wasn't working) -- and I had to go out of my way to get that at the time. Now of course he's 30 -- and still avoids any type of milk products.
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